The JECP‐European Society for Person‐Centered Healthcare (ESPCH) Section on Person‐Centred Care

In the current issue of the JECP, we welcome readers to the new Section on Person-Centred Care (PCC), a joint initiative between the Journal and the European Society for Person-Centred Healthcare (ESPCH). The inauguration of the ESPCH was initially announced within the European Journal for Person-Centred Healthcare (EJPCH, the official journal of the ESPCH)1 in September 2013.2 The Society was established with a wide-ranging remit set out in its initial 10 Year Strategic Plan (2014–2023), with the general mission of clarifying the conceptual basis of PCC, establishing a broad ESPCH-formulated definition, and then moving forward on this basis to the development of conditions-specific person-centred models of care for operational implementation within modern healthcare systems. The interest of the JECP itself in PCC has taken varying forms over the almost three decades since the foundation of the Journal in 1995. We do not provide here a detailed historical account of that evolution and progress, but instead draw briefly upon some three specific articles (and later, also on other key texts) to place the institution of the current Section on PCC in general context. In each case, the reader is referred to the individual original papers for their associated bibliographies. ‘Medicine today is not what it used to be. Exponential increases in technological and biomedical advance over the last 100 years or so have radically transformed the scope, possibility and power of clinical practice, driving enormous shifts in individual and population health. Yet despite such staggering progress, there is a growing and pervasive sense of unease within international medicine, indeed a frank recognition perhaps, that all is not entirely well, leading an increasing number of authors and commentators from a wide variety of clinical, academic and patient backgrounds, to claim that medicine has entered a time of significant crisis, urgently needing to re-learn what it has progressively forgotten in over a century of empiricism. The aetiology of the crisis in medicine is complex in nature, but is characterized principally by the evolution of a scientistic reductionism and executive technocracy in health care, the former deriving from movements within medicine itself and the latter arising from the colonization of health care decision making by non-clinical administrators remote from clinical practice, a new elite that has emerged from the rise of managerialism within global health services’. ‘EBM has never quite fully understood that people who have become ill present not as a collection of organ systems, one or more of which may be dysfunctional requiring scientifically indicated technical and pharmacological interventions, but rather as integral human beings with narratives, values, preferences, psychology and emotionality, cultural situation, spiritual and existential concerns, possible difficulties with sexual, relational, social and work functioning, possible alcohol and substance abuses and addictions, worries, anxieties, fears, hopes and ambitions, personal life goals and aspirations—and much more. Scientific medicine can, by its nature, address only a fraction of such concerns, illustrating the limits of science in medicine, limits which directly and unequivocally preclude the very notion of a science-based clinical practice’. ‘The last decade in particular has brought with it, in response to these dilemmas, an increasing recognition that chronically ill patients need far more comprehensive forms of assistance than the technoscientific approaches which continue to be favoured by EBM. This mandates the need to move away from our currently impersonal, fragmented and decontextualized approaches to the management of these conditions, towards newer models of care that are personalized, integrated and contextualized. In this way, affordable biomedical and technological advances can continue to be delivered to patients on the basis of objective clinical assessment, but within a humanistic framework of care which strives to understand the subjective experience of illness and to respond to it as effectively as possible. Such imperatives have led to the emergence of a new discipline of academic study and clinical action termed ‘person-centered care’ (PCC). PCC is a compassionate and comprehensive approach to the care of those who suffer and represents a high ethical ideal. It argues that modern health and social care needs not just science alone, but rather science plus—science plus humanism. For this reason, it may be considered intuitively the ‘right’ approach to the management of the health and social complexities of chronic illness. But there is much more than intuition to be taken into account when arguing for the superiority of PCC approaches above EBM or over ‘care as usual’. Indeed, a rapidly accumulating empirical research base is now complementing the burgeoning qualitative research literature of PCC, with three distinct justifications for this new model of practice having recently been articulated—(a) an ethical/professional justification, (b) an ‘evidence-based’/scientific justification and (c) an economic justification. Progress of this type is in contrast to that of EBM, which has remained a concept in search of a convincing empirical justification that, as we are able to see, has so far eluded it’. In parallel with, and subsequent to, the publication of these articles, a great deal of progress in the field has been made, guided by ongoing, wide-ranging discussions of the imperatives for PCC. Why should we ‘do’ PCC? And if it is agreed that PCC has the potential to bring many benefits to patients over and above ‘care as usual’, then how is it to be more widely implemented and its methodologies refined? For the purposes of this Editorial Introduction, we will address these questions in outline here before proceeding to an exhortation for an increased pace of methodological development in the field, and an explanation of the reasons for why we advance it. We will then conclude with a Call for Papers for the new Section which invites contributions on each of the many areas of focus discussed, from the wide variety of colleagues who collectively constitute the modern ‘healthcare ecosystem’. We have previously argued that there are three distinct ‘justifications’ for ‘doing’ PCC. These (touched upon in the latter part of the conclusion from5 directly above) are represented by an (a) ethical/professional justification, (b) a scientific/evidence-based justification and (c) an economic justification.6 In describing the ethical/professional justification, we refer to the argumentation posed by Miles and Loughlin within the first of the three article exemplars given above. Specifically, that while the exponential increase in biomedical and technological advances over the last 120 or so years have radically transformed the scope, possibility and power of clinical practice, it has nevertheless been possible to observe that as medicine and healthcare have become increasingly scientific, they have also become increasingly depersonalised.3 This inverse correlation was formally documented by Peabody almost a century ago in 1927,7, 8 then some few decades later in the 1940s by other investigators such as Tournier,9 and toward the end of that century by notable figures such as Bailint10 and Engel.11 These investigators described a general decoupling as occurring between science and humanism in medicine, illustrated by an accelerating dissociation of medicine's duty to ameliorate, attenuate and cure (the use of science in medicine), from its duty to care, comfort and console (the preservation of the humanity of medicine).12 This process, observable therefore during the entire course of the 20th century, has continued to increase and embed in the 21st. In consequence, medicine and healthcare, as we see them practised in the first quarter of our current century, continue to display a ‘preferential fascination with the molecular and cellular basis of disease, rather than an authentic fascination with the person of the patient’.6 There appears, then, a signal failure to act in recognition of the fact that ‘the disease is part of the patient and not the patient part of the disease’, and that patients, having become ill, present to clinicians and health systems ‘not as a collection of organ systems, one or more of which may be dysfunctional requiring scientifically indicated technical and pharmacological interventions, but rather as integral human beings’.6, 12 If clinicians do not actively return to seeking an understanding of the patient's subjective experience of illness, then the opportunity to identify the plethora of important needs which derive from it is frankly neglected, and risks clinicians functioning more as technicians in applied bioscience, rather than acting as caring professionals exercising skill and judgement in the context of the unique individual case.13 If such a transmogrification were allowed to progress to completion, and it is already far advanced, then the depersonalization (indeed dehumanization) of clinical practice, will inevitably result in a revision (meaning, for us, failure) of medicine's historic philosophies and ideals, with patients seen not as persons, but rather as subjects, objects or complex biological machines.14-16 With Montgomery,17 we argue in this context that medicine is fundamentally a human endeavour with a moral character that employs science but which does not directly equate to it.18 Medicine, then, is a science-using practice which, as we have discussed, has an indispensable duty to care, comfort and console, as well as to ameliorate, attenuate and cure. These distinct, but highly interrelated functions, must be firmly held together in tight integration, and never to be held apart as if they were polar opposites or selectable options.17, 18 To consider the scientific/evidence-based justification for ‘doing PCC’, let us move now beyond this ‘simple’ account of the former imperative referring, as it does, to medicine's foundational humanism, to an overview of ‘the evidence for doing PCC’ itself. It has been said that the contradistinction between the nature and outcomes of humanistic medicine, and depersonalised/dehumanized medicine, illustrates why PCC is intuitively the ‘right’ way to practise clinically. But, as may easily be seen, there is a great deal more than intuition itself to be considered when studying the utility of PCC within modern healthcare systems.6, 12 As we write, the substantial quantity of qualitative research that has explored the impact of PCC-type approaches to clinical care over many decades, and which has served progress in the field extremely well indeed, is now being increasingly augmented by a rapidly accumulating empirical research base, and by the results from mixed methods research in addition. Taken as a whole, these well-established modes of experimental enquiry have confirmed the potential of PCC to modify a range of highly important processes and outcomes of care in a wide variety of differing clinical settings.6, 12 The principal indices of interest in this context focus on core aspects of service provision which span, essentially, the entirety of the patient journey beginning with diagnosis and the institution of therapeutics, to the end of the disease trajectory itself. For example, PCC approaches to care have been observed to increase patient adherence to both simple and complex medication regimens, and to decrease the frequency of primary and secondary care visits and clinical consultations. Perhaps unsurprisingly, from a probabilistic standpoint, improved adherence rates to pharmacological therapies and other clinical recommendations, appear to translate into a corresponding decrease in the frequency of disease exacerbations, helping to preclude exacerbation-related increased hospitalization rates and, following hospitalization, extended lengths of institutional stay.6 Additionally, accumulating evidence indicates an ability of PCC-mediated approaches to care to increase patient (and patient family) health literacy. These are associated with the selection—assisted by shared decision-making between clinicians and patients—of more conservative than radical treatment options, which typically align more closely to the patient's own lifestyle needs. Moreover, PCC approaches to care have been correlated with the maintenance of, or even increases in, patient and also clinician satisfaction rates with care. Further benefits include observed increases in the rates of confident self-help, care and management, and in measures of health-related quality of life.6, 12 Of significant importance also is the ability of PCC practices to reduce clinician burn out, and to reduce the rates of malpractice PCC approaches to care have been associated with of care or in as we consider briefly 12 In then, the rapidly growing evidence base for the of PCC-type approaches on patient and service are of to the and of clinical care and health of and of to the to patients and clinicians of PCC approaches in the as are their in in the what these for well with chronic and complex in over their The way forward now is to the evidence base ongoing, health research very recently in and and service in healthcare in of and have seen a growing on of deriving from the of the and of the on health systems, which brought many institutional health to the of it is more than the time of to healthcare and clinical service to move away from a currently focus on the basis of healthcare toward the person-centred ideal. Yet the of as it is away from a focus on the of service toward a and on patient which is to in the basis of current and accumulating it is rapidly that PCC has the potential to significant within a variety of important indices of patient and healthcare service that are directly of which are associated with an increased quality of care or For this reason, we urgently need far more health economic of in and it is from the literature that such are increasing in frequency and perhaps, a we can therefore health and clinicians to much to the increasing of PCC economic their we can only a implementation of PCC, so that this way of and doing in clinical can become an and indeed fully If we even the nature of the three for PCC in outline as they but each one needing to be considered with integral to the then we the do we PCC? 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We refer here to clinicians of all and of to health to and to social care to patients, patient and patient to healthcare to and healthcare to health to of the and healthcare and to of medicine and all of these colleagues to understand each and actively we that much to making PCC an operational and to the of clinical outcomes or clinical practice on the basis of and of practice which and both the and and and nevertheless in practice and the maintenance of For this reason, the ESPCH the revision of current ethical and mandates the of which PCC as a and imperative that is integral to clinical and not a or that is associated with an individual of Such have the to clinical from what we have referred to as the of technoscientific to a of person-centred We that the former can only be understood as care, while the latter for us, first in its nature, the from to high than an or a of with an associated moral PCC is in many a radical within our current modern health that have become on rather than and when and have become the operational to the of The understanding that PCC is not an but rather an indeed of healthcare is on of the of its within health and the increasing from patients for and compassionate care. In consequence, PCC is now firmly not only within what be termed the but also by all those other of the modern healthcare that we as new way of and doing in that the of in the care of patients, the of authentic The progress of PCC to has a and not a and such as that which so characterized the and development of In this way, PCC is establishing itself as the humanistic framework in which technoscientific advances in medicine and healthcare can be delivered to patients with the of in both and In this PCC can be described as ‘the new which to clinicians an to patients as this Editorial Introduction, we have considered modern of PCC, its and the in which in our methodological development and operational implementation should the new Section is to for on the specific areas of study we have our focus has by been and we welcome contributions on all aspects of PCC in all of the of the should their papers for the of the JECP Section on PCC, and before may be with the Section The authors of The authors have to